National Orientation and Mobility Certification Study



National Orientation and Mobility Certification Study

Development of Client Outcome Measure

For Examining Training Effectiveness

Ram N. Aditya, Ph.D.

Principal Investigator

Florida International University

Ronald J. Ferguson, Ph.D.

Project Director

Institute on Blindness

Louisiana Tech University

FINAL REPORT

Professional Development and Research Institute on Blindness,

Louisiana Tech University, Ruston, LA.

Under Grant Funding from

US Department of Education H235J000004

To Louisiana Center for the Blind

And subcontract to Florida International University

CONTENTS

| |Page |

| | |

|INTRODUCTION …………………………………………………………. | 1 |

|Background ………………………………………………………….. |1 |

|Measuring the effectiveness of O&M training ………………………. |2 |

|Functional Independence …………………………………………….. |2 |

|Operationalizing Functional Independence ………………………….. |7 |

|STUDY 1: CONSUMER EXPECTATIONS SURVEY …………………….. | 9 |

|Objectives ……………………………………………………………. |9 |

|Method ………………………………………………………………. |9 |

|Participants ……………………………………………………… |9 |

|Instrument ……………………………………………………… |10 |

|Procedure ………………………………………………………. |10 |

|Results ……………………………………………………………….. |12 |

|STUDY 2: FOCUS GROUPS ON INDEPENDENT LIVING …………….. | 13 |

|Objectives ……………………………………………………………. |13 |

|Methodology …………………………………………………………. |13 |

|Findings ……………………………………………………………… |14 |

|3.3.1. First focus group: Miami ……………………………………… |14 |

|3.3.2. Second focus group: San Francisco …………………………… |17 |

|3.3.3. Summary ………………………………………………………. |21 |

| | |

|STUDY 3: FOCUS GROUPS ON FUNCTIONAL INDEPENDENCE …… | 23 |

|Objectives ……………………………………………………………. |23 |

|Methodology ………………………………………………………… |23 |

|Findings ……………………………………………………………… |23 |

|STUDY 4: FUNCTIONAL INDEPENDENCE SURVEY ………………… | 26 |

|Objectives ……………………………………………………………. |26 |

|Method ………………………………………………………………. |26 |

|5.2.1. Participants ……………………………………………………. |26 |

|5.2.2. Instrument ……………………………………………………… |26 |

|5.2.3. Procedure ……………………………………………………… |27 |

|Results ……………………………………………………………….. |28 |

|SUMMARY AND CONCLUSIONS ……………………………………… | 32 |

| | |

|REFERENCES ……………………………………………………………… | 34 |

|TABLE OF CONTENTS (Continued) |Page |

| | |

|APPENDIX 1 …………………………………………………………………... | 38 |

|APPENDIX 2 …………………………………………………………………... | 43 |

|APPENDIX 3 …………………………………………………………………... | 45 |

1. INTRODUCTION

1.1. Background

This report, prepared by the principal investigator, documents a series of studies undertaken at Florida International University under subcontract to the Professional Development and Research Institute on Blindness at Louisiana Tech University. These studies form part of a long-term project to evaluate the effectiveness of an approach to O&M training developed as an alternative to the conventional training practices that have evolved under the direction of professional associations in the blindness rehabilitation field over the last several decades. These include the American Association of Workers for the Blind (AAWB) and later, the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER). The historical evolution of both the conventional and alternative approaches to O&M training are outlined in Aditya (2004), and addressed in much detail by Ferguson (2001) and Wiener & Siffermann (1997). It will suffice here to note that the conventional system of training evolved out of the efforts of sighted persons working for the blind. Although blind individuals were involved in the education process in the initial stages of the evolution of O&M as a discipline, the formal adoption of sight as a requirement for O&M instructors in the 1960s effectively set the stage for domination of the field by sighted instructors. However, the divide between sighted rehabilitators and blind consumers began much earlier, and an alternative program of O&M instruction based on non-visual techniques took root in the 1960s with the National Federation of the Blind. A distinctive feature of the alternative method, besides the use of non-visual techniques, is the psychological adjustment to blindness, reflected in the use of sleep shades for partially sighted students of O&M as well as the group training and discussion sessions that form part of the curriculum.

The formal qualification for teaching O&M in the conventional approach is the certification offered currently by the Academy for Certification of Vision Rehabilitation and Education Professionals (ACVREP), also referred to simply as the “Academy.”[1] The qualification for the alternative program of instruction is the National Orientation and Mobility Certification (NOMC) offered by the National Blindness Professional Certification Board (NBPCB).

1.2. Measuring the effectiveness of O&M training

In contrast to the conventional certification process, which involves a curriculum of training embedded in academic and professional perspectives, the alternative school of preparation is based on practical and consumer perspectives. Therefore client performance is an integral part of the alternative approach. From a grass-roots perspective, therefore, the validation of the NOMC is best explored by examining the effectiveness of the alternative approach to O&M training. The effectiveness of the alternative approach, in turn, must therefore be measured in terms of the outcomes for the consumer.

Consequently, the long-term objective of evaluation of the alternative approach (and relatedly, the certification in this approach) translates to the immediate objective of evaluating client outcomes. Although the alternative school of O&M instruction stems from a consumer perspective, the expectation of the blind client has not been studied empirically. Therefore, the first objective of this project was to gain an understanding of consumer expectations of O&M training.

Being founded on a principle of empowerment of the consumer, a key ingredient of client outcomes is independence in everyday life. It is hoped that an understanding of client expectations could assist in the definition of what is termed here as functional independence for operational purposes in rehabilitation and research. A second purpose of this project was to develop and test a measure of functional independence. The studies that resulted from these objectives are described in the succeeding sections of this report.

3. Functional Independence

The term functional independence was coined as a result of certain findings from the initial set of focus group studies described in section 3 of this report. Originally, the construct of interest was independent living. This construct has been addressed in the theoretical and empirical literature; there are centers devoted to the promotion of independent living among persons with physical and cognitive impairments. Empirically, there have been several attempts to measure the extent of independent living achieved by members of various target populations—from adolescents (Inglehart, 1994) to children with visual impairments (Lewis & Iselin, 2002) to the elderly (Henderson-Laribee, 2000; Keller, Morton, Thomas, & Potter, 1999; Lawton, Moss, Fulcomer, & Kleban, 1982; Loeb, 1983; Mahurin, DeBettingnies & Pirozzolo, 1991; Schwartz & Barone, 1992), and young adults (Webber, Jenkinson, & McGillivray, 2002). A related stream of research has focused on the psychosocial aspects of everyday living (e.g., Jones, Petty, Bolles, & Mathews, 1986; Katz & Lyerly, 1963; Malm, May, & Decker, 1981; Morguelan, Michael, & Allan, 1978; Sanchez, 1987; Serban, 1975). However, nearly all of this research primarily addresses the need for assessment of microsocial and macrosocial functioning of persons with psychopathological conditions such as schizophrenia. Although these several measures had features that made them unsuited to the present contexts, they helped in gaining an understanding of the domain of independent functioning.

The instrument developed by Inglehart (1994) is specific to the context of persons who are with a guardian at the time of assessment. The measure uses responses from the guardian, who may be a parent, foster parent or some other person who is responsible for the care of the target individual on a 24-hour basis. The 12-item measure has four subscales labeled respectively as: Responsibility, Self-Care, Environment and Job. The items ask the caregiver for their perceptions of the target individual’s skill and knowledge levels in a specific area evaluated on a four-point scale ranging from 1 (nothing) to 4 (a lot). The first factor, Responsibility, has four items—buying personal items, handling money wisely, taking responsibility for what she or he does, and goal setting and planning. The second factor, Self-Care, has three items: when and how to get medical attention, finding a place to live, and getting around in one’s town. The third scale, Environment, also has three items to address the individual’s ability to successfully navigate and help create his or her emotional and physical environment on an ongoing basis: where to turn for help when needed; choosing one’s friends; and to maintaining one’s place of residence. The last factor, Job, has two items: the individual’s knowledge of a job skill, and knowledge of finding and keeping a job.

The psychometric properties of this measure were evaluated with responses to a survey assessing 1,642 adolescents in foster-care programs. It is not clear how many caretakers were surveyed (whether there is a one-on-one correspondence between caretaker and adolescent). Factor analyses revealed loadings of between .60 and .79 for the first factor, Responsibility. This subscale had a coefficient alpha of .82. Factor loadings on the three items on self-care ranged from .72 to .82, and the subscale had a coefficient alpha of .67. For the Environment subscale, factor loadings ranged from .64 to .84, with a coefficient alpha of .64. The Job subscale had factor loadings of .44 and .74, with a coefficient alpha of .59.

An assumption in Iglehart’s assessment of independent living skills using this measure is that the caretaker’s evaluations of the target individuals are credible and reliable. While theoretically the instrument may be administered directly to target individuals, the nature of the questions make it highly susceptible to socially desirable responding, and even otherwise, to psychological differences in rating scale calibration, as in what constitutes “a lot.” Besides the subjective nature of ratings, there is the likelihood of less knowledgeable individuals having a lower standard for a maximal rating on the scale than would individuals with a greater level of knowledge.

Sanchez (1987) created the Independent Living Skills Inventory (ILSI) to assess macrosocial performance, or social and self-care skills, of persons with chronic psychopathological conditions. The 70-item ILSI covers nine skill areas: Personal Management (6 items), Hygiene & Grooming (9 items), Clothing (5 items), Basic Skills (6 items), Interpersonal Skills (17 items), Home Maintenance (6 items), Money Management (6 items), Cooking (8 items) and Resource Utilization (7 items) (p. 12). The items are rated by care providers, or members of the intervention team assigned to patients, on a 4-level ordinal rating scale as follows: No Competence (NC); Limited Competence (LC); Dependent Competence (DC); and Independent Competence (IC). The nine modules or subscales allow for ratings by multiple members of the team depending on each person’s area of expertise. An item from the cooking subscale, for instance, reads: “Prepares simple meal for self (soup from can, sandwich),” and one from the clothing subscale reads, “Wears shoes and clothes that are clean and in good repair.”

Interrater reliability of the ILSI scores was examined in a preliminary study by Sanchez (1987) involving 48 patients, with each being rated by two independent interdisciplinary teams comprised of five raters each (p. 16). Raters were trained in a brief in-service training session. The interrater reliability coefficients for the nine subscales ranged from .64 (for Money Management) to .93 (for Cooking). The ILSI also exhibited discriminant validity in that scores for outpatient clients showed higher scores than those for inpatient clients on seven of the nine subscales.

The ILSI is directed primarily at patients with Chronic Mental Illness (CMI), and has been psychometrically tested on a sample based on Goldman’s (1982) description of individuals with CMI. As such, the mode of assessment (based on multiple raters) is unsuited to the present application. However, as a behavioral measure, it has certain advantages that guided scale development in the present project.

Another measure of life skills is the Social-Adaptive Functioning Evaluation (SAFE; Harvey, Davidson, Mueser, Parella, White, & Powchik, 1997). This is a 17-item scale to assess social competence and adjustment, self-care, and other skills in daily functioning of persons diagnosed with schizophrenia. This scale measures a number of domains such as bathing/grooming, eating, money management, respect for property, and orientation/mobility in geriatric patients with schizophrenia. Harvey et al. (1997) generated the 17 items after searching the literature, interviewing clinicians and experts in the field, and treating and interviewing geriatric patients. Each item consists of 5 statements ordered hierarchically to represent (with numeric codes in parentheses): no impairment (0), mild impairment (1), moderate impairment (2), severe impairment (3), and extreme impairment (4). A rater (e.g., a psychologist, psychiatric nurse, social worker) assigns a rating based on the above categories for each of the 17 items. The ratings are summed to yield a total score. With a sample of 60 subjects, the SAGE scale yielded a Cronbach alpha of .90; individuals items had intraclass correlations of .87 or above. Convergent and discriminant validity were established using a variety of psychiatric measures used with schizophrenia patients. However, total SAFE scores correlated .55 with age and -.27 with education, indicating the strong and moderate predictability of SAFE scores from these two variables respectively. As such, while suited to the geriatric population, the SAFE measure is not appropriate for the measurement of functional independence in the blindness context.

Malm, May and Decker (1981) developed a measure for use by social service agencies in the field of mental illness that addresses a broad range of skills. It focuses on the current quality of life of a patient, including household maintenance skills, education, interpersonal skills, and leisure activities. The administration of the instrument is similar to the SAFE measure described above.

Also looking at the quality of life of persons with schizophrenia, Warner, Girolamo, Belelli, Bologna, Fioritti, and Rosini (1998) used a measure called the Lancashire Quality of Life Profile (LQOLP) developed by Oliver (1998, Oliver, Huxley, Bridges, & Mohamad, 1996). This instrument, administered as a structured interview, involves both subjective ratings of satisfaction and objective items in nine life domains, including employment and income, accommodation, religion, safety and legal aspects, family life, social and health domains. However, it is similar to the instruments described earlier in that it is intended for mental health patients. Several other scales designed primarily for mentally ill patients, such as the Katz Adjustment Scale (KAS; Katz & Lyerly, 1963), the Personal Adjustment and Role Skills Scale (PARS; Ellsworth, Foster, Childers, Arthur, & Kroeker, 1968), Social Behavior & Adjustment Scale (SBAS; Platt, Weyman, Hirsch, & Hewett, 1980), the Psychiatric Status Schedule (PSS; Spitzer, Endicott, Fleiss, & Cohen, 1970), and the Psychiatric Evaluation Form (PEF; Endicott & Spitzer, 1972) have been reviewed by Wallace (1986). Further, Weissman (1975) has provided comparative information on 15 such scales measuring social adjustment.

These scales were useful in reviewing domains of relevance to independent living. However, the actual items were often framed in terms that would not be suitable for the purposes of this project. In most cases, for instance, the instruments used ratings by caregivers, because individuals with cognitive impairments or other mental conditions would not be in a position to answer the questions or provide assessments of their behaviors themselves. In the case of blindness and visual impairment with otherwise normally functioning individuals, the problem is more of a physical nature, although social and emotional skills do play a role in how easy or difficult it might be for a blind individual to get something done. However, there were no instruments addressing independent living skills specifically in the blind adult population.

One study that examined independent living skills in the visual impairment context, albeit with children, was conducted by Lewis and Iselin (2002). These investigators examined the independent functioning of 10 sighted children and 10 children with visual impairments. The researchers drew up a list of 101 questions on independent functioning that covered seven areas: personal hygiene skills (14 items), dressing skills (15 items), clothing care (5 items), kitchen skills (23 items), home care skills (21 items), use of money and the telephone (12 items), and community skills (11 items). The substantive findings of the study are irrelevant to the present discussion; further, the severe restriction in sample size precluded any meaningful psychometric analysis of their instrument. However, their list of items on independent living skills provided additional ideas in developing the functional independence survey for adults.

4. Operationalizing Functional Independence

The literature reviewed in the previous section revealed two facts regarding the measurement of independent living skills. First, much of the available literature focused on the mental health context. Second, researchers typically developed the measures used in empirical studies from a caregiver perspective. Such a perspective might be understandable in the field of mental health where the target population consists of individuals with cognitive and emotional conditions who may not be in a position to define the skills they need. However, it was felt that a more rigorous approach involving consumer expectations would be appropriate for the blindness field. Accordingly, a survey of consumer expectations was designed to provide input into the development of a measure for independent living skills. Starting with consumer expectations was deemed an important aspect of the measurement of ultimate outcome criteria for validation of O&M training under the alternative model—especially since the philosophy underlying the alternative approach is based on a consumer perspective of blindness.

While client expectations would provide a good starting point for conceptualizing training outcome criteria, there are other aspects of the rehabilitation process that are not as readily accessible by the consumer. For instance, depending on the age of the consumer, the experience of persons living with the blind individual may provide useful insights on what skills are needed to live independently. Also, rehabilitation professionals may be in a better position to know what qualities and skills that employers consider desirable. For this reason, two focus groups were organized, covering the western and eastern halves of the geographical region of the United States. The focus groups consisted of parents, rehabilitation professionals, and researchers in disability studies; it was hoped that this body of relevant individuals would provide useful insights into an operational definition of independent living.

The initial attempt was to arrive at a definition of independent living for general application. Therefore, the participants for the focus groups were drawn from a variety of disability areas. However, it became evident from the two focus group sessions that a common definition of independent living cutting across the diverse areas of disability might prove to be impossible to achieve. It also became clear that the term “independent living,” already in use by other fields, might not be the most appropriate for the purpose of specifying outcome criteria in blindness rehabilitation. Thus, the term “functional independence” was coined to more accurately represent the variety of daily activities that legally blind individuals sought to engage in on their own, as sighted persons would do. Released, then, from the constraints of existing definitions, four more focus groups were organized, with the participants being chosen, however, from within the field of blindness. The focus group discussions are detailed in sections 3 and 4 of this report.

With the insights gained from the literature, the consumer expectations survey, and the six focus groups, items were written up for a measure of functional independence. Section 5 reports on the first survey of functional independence conducted with this newly developed instrument.

1. STUDY 1: CONSUMER EXPECTATIONS SURVEY

1. Objectives

In any good evaluation of training effectiveness, outcome criteria should be linked to the objectives of training as identified in a needs assessment (Goldstein & Ford, 2002, pp. 83, 138). In the context of blindness rehabilitation, typically such needs have been identified by rehabilitation professionals rather than by the consumer of rehabilitation services. As a result, in the traditional model of orientation and mobility (O&M) training, for instance, the training in O&M has been defined and designed largely by providers of such training. These individuals have been for the most part sighted, so that over the last several decades there has been an increasing gap between consumer needs skills provided by training programs. However, a lack of adequate evaluation of training effectiveness in terms of outcome variables has left the field in the dark about what can be accomplished. The growing dissatisfaction with this state of affairs by a consumer segment reflected in the growth of an alternative approach to O&M training fostered by the National Federation of the Blind (NFB). Although, by definition, a program of training developed by a consumer-oriented philosophy may be argued to have incorporated consumer needs in the training model, no systematic study of consumer expectations had been undertaken so far. Therefore, a survey of consumer expectations became the first step in the effort to identify O&M training needs and institute a continuous process of improvement to the alternative model of O&M training.

2. Method

2.2.1. Participants. The sample for this telephone survey was drawn from past clients of the rehabilitation services provided at Louisiana Center for the Blind. Thirty-eight individuals from those approached consented to the survey, either via mail or over telephone. However, five individuals who had mailed in their consent forms had not provided requested contact information, and so could not be contacted, as there was no provision for any other identification information contained in the consent forms. Two other individuals could not be contacted for the survey after multiple attempts, and had to be dropped from the study. Thus, a total of 31 individuals took part in the actual survey.

2.2.2. Survey instrument. The survey was in semi-structured format, and originally consisted of 17 items, with two open-ended questions. Based on a pilot testing of this instrument on a sample of 17 individuals, the survey was revised and substantially expanded to make up 34 items, as shown in Appendix 1.

2.2.3. Procedure. In order to protect client privacy, the initial contact of potential participants was made by the Louisiana Center for the Blind. The letter briefly explained the objectives of the study and the methodology, noting that participants would be compensated with a check for $40.00 on completion of the interview. Volunteers were requested to complete an enclosed informed consent form, noting their phone number and preferred time for the call by the interviewers. The consent forms were to be returned in the enclosed envelope, which was stamped and addressed to the research team at Florida International University. In this manner, the privacy of the participants was fully protected: the researchers did not get to know the contact details of those who did not volunteer for the study, and the rehabilitation center did not get to know the names of those who did participate in the study.

The first phone call was an informal introduction call and was made to set up an appointment with the participant. During this call the participant was told that the phone interview might take between 30-90 minutes. The phone interviewer did not comment on any of the questions that would be asked during the interview. This procedure assured that answers to questions asked during the interview were candid and could not be rehearsed in advance.

The participant was contacted again during their prearranged interview time. If at this time the participant was not ready for the interview, the survey was rescheduled. Three of the participants contacted did need to reschedule; all three completed their participation in the survey. The interviewer began by reiterating the objectives of the study. If the interviewee had no questions or concerns the interview proceeded. The interviewer first notified the participant that a recording device would be turned on (this was also stated in the initial letter they had received in the mail). The participant was requested to refrain from mentioning any identifying information while the recorder was on. Once the recording device was switched on, a verbal confirmation of the consent to participate was obtained before the survey got under way.

To control for biosocial effects (Rosnow & Rosenthal, 1997; Rosnow, Strohmetz, & Aditya, 2000) interviews were all conducted by the same person; this procedure also ensured that all of the interviews were consistent to the extent possible. During the interview the interviewer took notes for each of the answers given. The hand notes were used as a back up in case the recorder malfunctioned. The hand notes also served as a reference point for the transcriber when a word or a phrase was not clear during the transcription.

Question five (“how many O&M training programs have you attended”) usually determined the length of the interview. If a person attended more than two training programs the interview averaged 45-75 minutes. If a person attended only one training program the interview lasted between 15-30 minutes. A person who only attended one training program did not have to answer questions 10 through 18, because those questions related to a program undergone before their most recent program. Question 7, although apparently quite straightforward, took up the most time with the participants, as it was open-ended and resulted in rather elaborate narratives of client experiences with the O&M program in question. During the narrative, the interviewer jotted down the main expectations expressed in caption form on a hard copy of the survey; subsequently, these were used as prompts for question 14, which required respondents to provide ratings on each of the expectations mentioned.

Upon the conclusion of the survey the recording device was turned off. At that time the participants was asked if they had any questions or concerns that they would like to have addressed. After addressing these, their mailing details were noted on a separate log in order to assure that their participation compensation check could be mailed to them. In addition, the participant was given a name and a contact number to use in case any questions or concerns arose later. If the participant did have questions at the conclusion of the interview, the phone interviewer addressed the questions at that time. If a question arose that the interviewer was not able to answer at the time, the interviewer referred the question to the principal investigator and called the participant back once an answer was obtained.

After all of the phone surveys were completed the information on the recorded tapes were transcribed into word documents. In the event the transcriber could not decipher a word or phase, the hand notes from the interview were used to help clarify the information. If the hand notes were insufficient in determining what the participant had said, a notation indicating such was made in the transcribed text.

2.3. Results

Once all of the transcriptions were completed, a summary of the participants’ O&M expectations and suggestions (questions 7, 26 & 29, respectively) was compiled. From this summary two main categories (physical & psychological) and six subcategories were formed. The subcategories were comprised of intrapersonal and interpersonal dimensions for the psychological category. Both the physical and psychological categories were then divided into areas of specificity for the blind and visually impaired, and for the general population (i.e., anyone not blind or visually impaired). The lists of expectations that emerged from the survey are shown in Appendix 2, using largely the original expressions used by participants. Thus, items that seem similar at first glance but carry subtle distinctions in meaning are still listed as separate items.

The topics contained under the categories were then used in accordance with other sources of expectations with regard to O&M (i.e., focus groups and experts in the field of blindness and visual impairment), to create a pool of items believed to represent the physical aspects of orientation and mobility. The resulting pool of items was then used to guide researchers in their efforts to create a scale for assessing the level of independence of blind and visually impaired individuals.

3. STUDY 2: FOCUS GROUPS ON INDEPENDENT LIVING

1. Objectives

The focus group discussions were held in early 2003 in an attempt to unearth the core domain of the construct of independent living. Among the issues to be sorted out was the question of whether “independent living” skills should be viewed as distinct from orientation and mobility skills or as subsuming orientation and mobility skills. Yet another perspective might be one of orientation and mobility skills as being critical to independent living skills. Another issue of interest was the role of professional versus household tasks in the concept of independent living. These questions assume importance in the larger issue of rehabilitation, and what aspects of an individual’s life orientation and mobility training should try to resolve.

However, as initially conceived, a major objective of the focus group discussions, held in Miami and San Francisco, was to get at common ground in the concept of independent living among perspectives from diverse disability areas. Through such an effort it was hoped that a general scale for the assessment of independent living skills would be facilitated, enhancing the potential for comparative studies across disabilities as well as the examination of rehabilitation programs within a disability area.

2. Methodology

The first focus group assembled in Miami on January 27, 2003. Participants were from mid- to eastern regions of the United States. There were seven participants excluding the project director, the principal investigator (moderator) and a graduate research assistant. The discussion started at 9.30 a.m. and ended at 6 p.m. with a break for lunch. In the morning session, the attempt was to get at a consensus definition of the concept of independent living. In the afternoon session, the plan was to get specific items to operationalize the construct in a scale measure. Discussions were recorded with the permission of the participants, and later transcribed to facilitate the creation of a summary of findings presented in the next section. The moderator and the research assistant also took notes during the discussion. The morning session was set in motion with each participant in turn articulating his or her concept of independent living. All participants had been given a brief overview of the agenda for the discussion several days prior to the meeting, and were expected to have prepared their own notes for discussion. In the second session, the moderator summarized the main concepts emerging from the morning’s discussion, and asked participants to suggest specific items to address each aspect.

The second focus group met in San Francisco on January 31, 2003. Participants came from mid- to western regions of the United States. There were nine participants excluding the project director, principal investigator (moderator) and a graduate research assistant. Discussions started at 9 am and continued until 5.30 pm, with a break for lunch. The format was similar to the one described for the first group.

3. Findings

3.3.1. First focus group: Miami

The first question brought to the focus group members was: What is independent living? The salient points that came up during the discussion are listed below:

• Choice, consumer control, acceptable options, making one’s own choices.

• Residing in the least restricted environment, with as little reliance on others as possible. The ability to choose to do things within your own group.

• Being informed is part of a person’s choice process. Possessing the skills and opportunities to succeed on your own.

• Empowerment.

• There are 2 components to independent living, which are physical as well as, psychological (self-efficacy). They are inter-related and work together.

• A capacity for personal autonomy is needed as well as character and knowing who you are. Independent living is an educational and developmental idea. A person should be able to evaluate and choose a worthy way of life. They should also have the capacity for self-reflection and self-respect. To be independent it is necessary to break through social barriers and go beyond challenging social expectations. There is also a political aspect, which entails defending and articulating policies.

• Minimizing reliance on others unless it is a cultural value, in which case some people may choose to rely on others.

• Having control over decisions.

• You need to question if someone is doing something or can they do something.

• Choose between the things that we have available to us.

• There is a “cost” when making a choice that involves other people. Independence is the ability to have choices but also have the power to acquire the resources to support their choices.

• Be able to rely on other people but not be a burden on them. Have a range of resources. The power or control to make choices and responsibility to use resources.

• Is different for disabled people than for others or for different cultures.

• Living wherever you choose.

• Skills, ability, confidence to live where you want. Function to the best of your abilities.

• It is individualized and specific to each person. You don’t have to rely on anyone, but it is fine to do so as long as you are not bound to that choice of relying on someone else. “Can you…” is different from “Do you….”

• Choice is dependent on the language we use. Using topics such as going into the grocery store is “1950’s.” Everyone possesses autonomy it is just different for disabled people.

• Difference between barriers and boundaries. Independent within the boundary is the key to measuring independent living.

• The capability (as opposed to ability) to choose.

• Physical and psychological aspects work on a continuum. Psychological well-being defines independence.

• Barriers and boundaries have different meanings. There are consequences to independent actions. A person may have skills for independence but consequences can result as a matter of choices.

• Self-esteem is a driving force in independence.

• The need to learn that improper choices have consequences is important.

• An informed choice to be able to know the consequences is needed. Therefore you need skills training and ability to be informed to make a choice.

• Acceptable options when making a choice are on an individual level.

• Choices are limited because of fear. So fear needs to be conquered.

• Independent living means living on your own.

• The capacity to choose and make decisions.

• Highly individualized and too hard to define. Key components are choice, control, and acceptable options.

• Philosophically speaking it is to envision many ways forward (autonomy).

• No quality of life if you don’t make your own decisions.

• The ability or capacity to access information if needed

In the afternoon session, the question was reworded slightly, and the members were asked to share their opinions on what independent living meant to them. The following is a list of responses (edited to remove redundancy where applicable):

• Privacy with regard to medical information and personal sharing of information.

• Abilities and resources to secure and maintain accommodations, income, mobility, and social relationships.

• Economic security, friendships, intimacy (sexual), leisure time, the right to do the wrong thing, personal integrity, and right to decide what should be made private and public (In addition to mobility).

• To get where I want to, when I want to, with as little intrusion on others as possible. The ability and freedom to do what I want to do to secure resources. Mix with a variety of people (sighted, mentally handicapped, non disabled). To balance my checkbook and do my own personal mail. Not to have to rely on others to do personal things.

• Make my own living (money) by having a job. Having the ability to obtain transportation. Participate in church or other community activities the same as sighted people. Live life as others do without inconveniencing people.

• Degree to which I can do things for myself. Self-advocacy to help oneself to find options for oneself. Access information and have a way to communicate (spoken, written, computer).

• To have skills, confidence and control to make decisions without anyone else placing judgments on my decisions. Develop the widest array of skills, cooking, walking, mobility, etc… So you can choose from the array of options and they are not closed off.

• To have the ability to serve other people and not be viewed as using others. Have an external support system and build natural support networks. Meet the needs of children and other valued people in my life.

• Choice and control. Cognitive ability to make a choice. The control to make a choice. Take care of my family both emotional and financially.

• The degree to which I have something to offer someone else.

• Gain information to make decisions.

3.3.2. Second focus group: San Francisco

The first question proposed to the focus group members was: What does independent living mean to you? The following are salient points brought up in the responses.

• To survive, support yourself and others and to be able to give to the world.

• The kind of equality that transcends. Independent living is more psychological than physically based.

• Choice and having control over those choices as well as having a support system to help you.

• Independent living is knowledge and knowledge is power. The concept is individualized and means something different to everyone. Function is what counts.

• Understanding of basic needs such as food, clothing, shelter and hygiene. Acting to meet those needs. Communicating and acting to meet needs is also important, as well as being able to reciprocate to others.

• The empowerment of control. It is not about whether you can cook but whether or not you can tell someone what you want to eat and how to make it. Cultural issues come into play and can alter what independent living means to people. A support system that the individual is in control of is also important.

• To have the abilities and resources to secure income, relationships and accommodations.

• Freedom from the control of others. Self-governing. The notion that you can really do things for yourself. Skills to do the things you want and learn to deal with things others say or do about you. Show a good work ethic. Make an effort to meet society half way and give back to society.

• Education in philosophy. Human rights and considerations. Right to earn or have a living. Equal standing in law and with others. Be able to do anything I want to when I want to. Not to be constrained.

• Gain financial independent to meet basic needs.

• Being a parent without interference. Teach children to ride a bike and do other activities such as handwriting and daily activities.

• Not being intruded on by others. Freedom from outside intrusion.

• Not having people help you when you need it (i.e., a sighted person with a car, leaves blind people behind for lunch).

• Personality plays a role on whether you are left behind for lunch. Need to have the skills to prompt the sighted to ask.

• Public education is needed.

• Managing other people.

• Internal sense of independence, feeling within self.

• Relationships with other people, learned through social interaction.

• A belief within oneself gives autonomy and freedom to make choices.

• Knowledge within yourself or within support system.

• Realize you are as valuable as everyone else.

• Sense of “people hood” and wholeness.

• Knowledge is power, power is freedom; freedom is part of independence.

• Actively involved in discussions of their life.

• Exercising decision making to the level of their ability.

• Independent living can be an individual factor or communal factor or value.

In the afternoon session, the question posed was: What does an individual need to have to live successfully in this society? Alternatively, what might be some items that you would use to assess the extent of independent living in an individual? The following are responses of the group:

• Having control over my checkbook

• Choosing where I spend my money.

• Having control over your finances (Do you have the ability to control your finances?)

• Are you able to do the things you would like to do?

• What kinds of things are frustrating to you?

• Where do you see yourself in 5 years? What are the steps you will make to get there?

• What are your expectations?

• What would you be doing if this disability were not a factor in your life?

• Is there anything you want to do now that you used to do?

• What do you believe your limitations are?

• Are you able to take on something new and are you able to achieve it through problem solving?

• Can you feed yourself?

• Can you take care of personal hygiene issues in private?

• Are you able to write?

• Are you able to communicate?

• Can you talk?

• Can you express yourself and desires?

• You must have self-confidence that can or will be able to meet what life throws at you.

• You need to be able to provide a valuable service to family, friends, and community at large.

• You must become literate in Braille, or life choices will be limited.

• Literacy is necessary.

• Can you repair and clean your home?

• Can you hang a picture?

• Can you scrub a floor?

• Can you do odd jobs around the house?

• Are you able to take advantage of services around?

• Can you get change from a change machine or soda machine?

• Can you serve yourself gas at a gas station?

• You need to be your own advocate so you can tell people what you need for accommodations.

• Do you have the capacity to get nourishment?

• Do I have the ability to get something I need or want?

• Do you have control over your leisure time?

• Do you use the post office?

• Do you go to the bank?

• Do you do laundry?

• Can you navigate the system?

• Are you well rounded in social interactions (have a variety of friends)?

• Gender may play a role in some topics like shopping, cooking and laundry.

• You need to know the difference when to accept help and when not to.

• The rate of which appropriate technology is produced is slowing down and affects the way in which power is played out.

• What are your dreams?

• Where do people capture their dreams?

• Do you have access to information?

• Can you get places easily with out disturbing others?

• Making informed choices, and having those choices respected.

• Do you have healthcare access?

• Do you learn and teach from and to others?

• Having the balance and practicality of doing everyday things.

• Having resources to do things so life is balanced.

• Do you have a circle of understanding friends?

• The ability to do spontaneous things like getting into a car and going somewhere.

• To be able to escape from others.

• Provide shelter and living arrangements for self and family.

• Being able to take risks.

• Having a right to privacy.

3.3.3. Summary

It became evident from the start of the discussions at both meetings that any attempt to reach a consensus definition of the notion of independent living across disability areas would be an exercise in futility. The differences were particularly apparent between the perspectives of those concerned with physical disabilities and those concerned with cognitive or psychological disabilities. At the heart of the heated debate about a consensus definition of independent living was apprehension regarding the implications of such a scale, if one were to be developed, and the potential for “labeling” individuals, as one participant put it, based on scores from the scale. Another related issue was the resistance to the quantification of independent living skills for statistical analysis, without reference to the benefits that might accrue from such analyses. The first part of the discussion session thus came to an end without a consensus definition being reached.

In the second half of the session, again a similar pattern arose with respect to finding suitable items for a scale measure of independent living. However, the discussions were useful in highlighting the complexity of the problem with this construct in the disability field, and in providing a view of the diversity in meanings that participants could glean from the construct. At the same time, as can be seen from the above listings of major points in sections 3.3.1 and 3.3.2, some similar themes did come across in both group discussions.

The general common aspects of independent living brought out by the two groups of focus group participants were:

• The ability to have freedom of choice.

• Control over one’s own lives and decisions.

• The knowledge, education, and recognition of the boundlessness of available options.

• Minimal reliance on others, unless culturally warranted.

• The ability to acquire information.

• Power over one’s own life (empowerment).

• Privacy.

• The need to feel important by being able to give (emotionally & financially) to others (children, family, friends, organizations, humanity).

• Psychological factors such as self-esteem, self-efficacy, confidence and autonomy.

• Support systems.

• Mobility, ability to get up and go whenever and wherever one wants.

• Obtain necessary skills.

• Live on your own (if desired or if needed).

• It is an individual opinion and culturally influenced.

• Literacy or some communication skill.

The difficulty of obtaining consensus across disability areas as to a definition of independent living influenced the investigator’s decision to (a) adopt a different name for the concept that more accurately reflected the ultimate objectives of this study and, as a result (b) restrict the definition to the context of blindness. Thus, the term functional independence was coined in order to get away from philosophical discussions of the distinction between independence in spirit versus physical independence. This decision formed the basis for the next study, described in the next section.

4. STUDY 3: FOCUS GROUPS ON FUNCTIONAL INDEPENDENCE

1. Objectives

The primary objective of this study was similar to the previous one, with the modification of the term to functional independence to emphasize the grounded nature of the construct (as compared to philosophical contemplations about the nature of independence). Further, the focus group participants were drawn from the blindness field only, as compared to the general area of disabilities in the previous study. Once again, as in the previous study, the attempt was to get at an operational definition of the construct of functional independence from rehabilitators, consumers of rehabilitation services, parents of blind or visually impaired individuals, and others involved in blindness rehabilitation. The ultimate objective of this exercise was to assemble items for a measure of the construct.

2. Methodology

Four focus group discussions were arranged in early 2004. Participants were drawn from various parts of the United States; discussions took place through teleconference. One group was moderated by the project director from Ruston, LA; the other three groups were moderated jointly by the principal investigator in Miami, FL, and by an orientation and mobility instructor in Long Beach, CA. The first group (moderated from LA) consisted of rehabilitation professionals, clients, and researchers. The other three groups consisted of adolescent consumers of rehabilitation services, parents of blind children and adolescents, and adult consumers of rehabilitation services respectively.

4.3. Findings

With the participants focused on the blindness context, as compared to disabilities in general, the notion of functional independence could be elucidated more easily. Participants were instructed to think about what it meant for a blind individual to be able to live an independent lifestyle, keeping in mind that no one, sighted or blind, is completely “independent” in his or her life. Therefore, the objective was to narrow down the list to aspects that posed particular problems for blind individuals functioning in a largely sighted society, dealing with things that have been constructed with sighted consumers in mind. Salient among the aspects mentioned by the groups as being relevant to functional independence were signage—needing labels for things inside the house so that one did not need other people to identify such items as cooking ingredients; the ability to keep track of things moved around the house if one were living alone; and accessing printed matter, since most books are not available in either audio or Braille format; being able to effectively use public transportation, which was not always available to begin with. Another recurring theme that emerged in the discussions reflected the frustrations of dealing with a society that had low expectations of what blind individuals were capable of doing. This would often translate to proving constantly that one could do some things, however simple, and dealing with praise for doing even simple things. Finally, there were inherent limitations at the work place in carrying out one’s job that required the help of a sighted person. One commissioned blind officer in the defense services mentioned the problems of evaluating the performance of non-commissioned officer, conducting inspections of the unit for such aspects as tidiness and appropriate pin colors, and then the even more important task-related activities such as, in telecommunications, the identification of wires by color codes. However, while task related professional aspects of functional independence might vary across individuals, the aspects concerning one’s personal life seem to be much more generalized—although the importance or degree of priority given to each aspect might vary from person to person.

Two broad domains of functional independence emerged from the discussions. One was the physical aspect of dealing with little things to be done in everyday routines. The second was the psychosocial-cognitive aspect of having to deal with things or people on a day-to-day basis. It was also evident, as had been hinted at in the earlier focus group discussions, that these two domains were often intertwined such that they were operationally inextricable. For instance, the physical challenges of remembering where things have been placed around the house may be quite within the reach of an individual with habitually good powers of mental concentration and memory, whereas this aspect may be a major setback for another person who is given to absent-mindedness. To the former, then, listening to someone marveling at how this person is always able to find what he or she wants may be annoying; to the latter, the same praise, given at an appropriate occasion, may be a source of encouragement.

Another way of dichotomizing an operational definition of functional independence that emerged from studies 3 and 4 was in terms of ability versus actual behavior. It was clear from the discussions in study 3 that a person may have the ability to perform a task independently, yet not do so for a variety of reasons. To illustrate, an individual may be able to effectively use public transportation without much help from others, but would not be in a position use this ability if no public transportation facilities were available at his or her location. A measure of functional independence that does not address this distinction would be inadequate in its applicability for practical enhancement of rehabilitation services or orientation and mobility training.

4. STUDY 4: FUNCTIONAL INDEPENDENCE SURVEY

1. Objectives

The findings from the focus group discussions, extant literature on independent living measures, and the telephone survey of clients of rehabilitation services all served to foster an understanding of the physical tasks and emotional obstacles that might stand in the way of legally blind persons leading an independent lifestyle and integrating effectively with sighted persons functioning in an environment that is designed for sighted individuals. Based on the specific and general information gained from these studies, as well as the accumulated experience from prior studies described in the review of the literature, a pool of items was drawn up to represent the different domains covered by functional independence. The objective of Study 5 was to conduct initial psychometric testing to construct a scale for functional independence.

5.2. Method

5.2.1. Participants: A volunteer sample was drawn by contacting participants of a previous nationwide study who had indicated their willingness to participate in future studies concerning blindness rehabilitation, and names of additional potential participants referred to the research team by members of this group. A total of 220 individuals (60% female, 40% male) participated in the survey. Mean age of the sample was 51.5 years, with a standard deviation of 16.8 years; they ranged from 19 to 94 years. All were legally blind adults of either sex who had availed of rehabilitation services at some time within the last two to three years.

5.2.2. Instrument: On the basis of accumulated data from prior studies, the expectations survey, and the focus group discussions, a pool of items was drawn up to address the various facets of functional independence as discussed above. One consideration was the distinction between the ability to do something and the practical application of that ability as reflected in behavior. The lack of actual behavior does not, however, imply a lack of ability—the reason may have to do with lack of facilities in the environment. Accordingly, the scale comprised of two sets of items: one to measure the ability domain, and the second to measure the behavior aspect discussed earlier.

Another consideration was the valence, or importance of the item to the population of blind and visually impaired individuals in general. As one participant in Study 2 pointed out, the ability to drive a car may be critical for someone who has driven a long time, but not to one who has never driven. Therefore, a conscious attempt was made during the construction of the instrument to address those aspects of everyday living that would be relevant to all persons, sighted or otherwise.

Finally, the categories proposed by a number of researchers in the literature reviewed in section 1.3 were considered in drawing up the items for the measure. In all, the “A series” (ability) consisted of 59 questions, the responses to which were to be checked from three options, and scored as follows: No = 1, Yes, with help = 2, Yes = 3. A sample item is “Can you handle your money by yourself?” The “B series” (behavior) consisted of 76 questions concerning specific activities. The frequency of engaging in each activity was rated on a five point scale with the following anchors and scoring scheme: 1 = Never; 2 = Seldom; 3 = Sometimes; 4 = Often; 5 = Always. A sample item is: “Do you think about how to solve a problem by yourself first, whatever the nature of the problem?” Some of the items addressed not a behavior but a feeling or affective state, such as the following item: “Are you comfortable getting up and leaving in the middle of a meeting or conversation among mostly sighted persons, for whatever reason?” Additionally, a set of nine items was based on parenthood, meant only for those participants who were parents. These items were also answered in the same manner as the rest of the “B series” items.

5.2.3. Procedure: Persons from the list supplied by the principal investigator (obtained as described in section 5.2.1. above) were contacted by telephone by a team of trained professional survey administrators at the Institute for Public Opinion Research (IPOR) housed at Florida International University. Up to 8 calls were made to contact an individual before a case was given up. Appointments for the interview were made at the participant’s convenience, as interviewers were available to call from early morning until late at night on working days. The survey was completed in approximately five weeks during the summer of 2004. A total of 220 surveys were completed.

3. Results

The responses to the 59 ability items and 76 behavior items were separately summed to yield two composite scores, labeled A-index and B-index respectively. Both indices displayed desirable alpha coefficients of reliability (A-index: .92; B-index: .95). These coefficients indicate a high degree of internal consistency among the items in the scale, and relationship of individual items to the overall composite score in general.

It is of interest to see how indices A and B relate to each other. Since these two indices are derived from self-reports, one may expect a certain degree of association to start with, on a theoretical basis: an individual cannot exhibit a certain type of independent behavior if he or she did not have the basic capability to start with. On the other hand, for a variety of reasons, as mentioned earlier, having an ability does not imply that it would be put to use in actual behavior. In this study, the Pearson product-moment correlation between the two indices was .70 (N=220, p

94. Do you bump into things in and around your home?

Global items

On a scale of 1 to 10, with 10 representing the most,

95. how close do you think you are to leading the life you would have led if vision disability had not been a factor in your life?

96. How much control do you feel you have over your own life?

Demographic questions:

Your age:

Gender:

Are you a parent? Yes No

Do you have an e-mail account? Yes No

In the most useful O&M training program that you underwent, what size of cane did you use?

1) A cane that came as high as your waist

2) A cane that came as high as your chest

3) A cane that came as high as your chin, or higher

In that program, were you taught an open-palm grip?

Presently, you use which of the following?

1. Regular cane

2. Conventional long cane

3. “NFB” or “IOWA” cane

Are you (1) Employed

2) Self-employed

2) Not working

[If employed,

Do you work full-time? (No = 1, Yes = 2)

Do you have any residual vision or do you have no vision at all?

Residual vision = 1; No vision at all = 2

[If no vision at all—

Are you congenitally blind? No = 1, Yes = 2

If not congenitally blind, at what age did you lose your vision?

Do you have other disabilities besides vision impairment?

If yes, please name all other disabilities _____________________

END OF SURVEY

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[1] Previously administered by AER, which currently continues to “renew” university programs as part of ACVREP’s certification examination eligibility criteria.

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